“I can’t ever die….” (or, Fear of the Future)

Not long after a child is diagnosed with autism, and the realization that the child will quite likely require lifelong care/support, many parents go through a phase of fear about what will happen once the parent dies.  Because of the incredible amount of effort and involvement required of parents as children grow, it is common for parents to believe that they are the only ones that can provide their child what they need to grow and thrive.  The comment, "I can't ever die, what would happen to my child?" is all too common among parents of autistic children.  Unfortunately, this unknown future adds an extra level of stress to parents who are already at the breaking point of trying to figure out what is happening an what they can do for their child. 

Though this will be an ever-present anxiety for parents, there are things that parents can do to help ease this stress.   In most cases, these are things that all parents should do anyway.  Some things you should do when your child is still a minor, in no particular order:

• Establish a Special Needs Trust for you autistic child
• Maintain a current Will, that includes guardianship for your child.
  • It is important to make sure you discuss this with the people you want to take guardianship of your child
  • The Will should include, as much as possible, the resources (money, etc) that the new guardian will need to help raise your child
• Ensure you have adequate life insurance, and that your child's Special Needs Trust or designated guardian are the beneficiaries
• Maintain an updated (annually is probably good) file of paperwork related to your child's treatment to date, and keep it with your important personal documents (like your Will).  This file should include anything related to diagnosis, meetings with school district to establish need for support, past IEPs, etc.  (This is also very useful to have for yourself while you are alive, and will greatly ease the transition from one school district to another if you ever move.)

This is not an all-inclusive list, but provides some basic guidance.  Obviously, you should consult an attorney qualified in the areas of Special Needs Trusts and Wills (may not be the same), as well as a tax attorney/consultant to understand the tax implications of the trusts, life insurance beneficiaries, etc. 

This can all be daunting, especially when added to the stress and expense of just trying to figure things out in the early days of living with autism.  But this is short-term investment of time and resources that will pay off well in the end.  And once you get this fear out of your mind and dealt with, you can start focusing on the present and helping your child live in the world.

What happens when the autistic child becomes and autistic adult?  I'll cover that in a later post.

An unexpected childhood - An autism mom asks: What makes a child perfect?

Written by Kristina Chew, this essay was originally published September 10, 2003 in the Princeton Alumni Weekly and is reprinted here with permission. 

Kristina is a Classicist, a professor of ancient Greek and Latin, at a college in northern New Jersey. She studied Classics at Princeton University and received her Ph.D. in Comparative Literature and Classics from Yale University.

You can keep up with Kristina and Charlie at Autismland, and check out Krisitina on her soapbox at AutismVox.

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After my son, Charlie, was born in May 1997, I purchased a sweater with a big orange P on the front. What will he be when he grows up, friends and relatives wondered aloud. And, with a wink: What college?

Charlie is six now. Cleaning out drawers the other day, I took out the sweater, long outgrown. “What letter?” I asked, pointing to that big P.

“Orrwange,” said Charlie. Behind his glasses, both pupils slid into the corners of his eyes.

“What letter?” I asked again, not pointing this time. Charlie can focus only on one thing at a time, whether that something is big, or orange, or the letter P.

“Orrwange. Oh-ange.” A shake of his shoulders and Charlie turned his head toward the sweater. “Orrrrrrr–P. Is P.”

“Good job!” I clapped and kissed his cheek. With a resolute “Go pay! Down-stairs!” Charlie left to play. I folded the little sweater and stowed it away.

Charlie has autism, a neurobiological disorder that profoundly impairs an individual’s ability to communicate and to interact socially. Charlie’s brain is not wired to discern the cues “neurotypical” people rely on for communication: facial expression, body language, and a range of signs and gestures that most of us simply “read” by instinct. We do not know when Charlie has a stomachache; he can’t tell us what hurts. Charlie can make requests but he can’t use words to explain how he feels – if he’s tired or sad, for example.

Individuals with autism talk most readily about the concrete and physical; some can repeat long scripts of their favorite videos. But they must be taught the functional, social aspect of language, such as saying “hello,” or taking a turn in a conversation. Autistic people develop ritual practices – running back and forth across a room, or tracing their hands along walls or the edge of kitchen counters, for example – to gain a sense of where they are; these mechanisms help regulate a sensory overload. When these fragile mechanisms break down, an autistic person’s discomfort is apparent.

Autism once was considered a rare disorder that affected four to five in 10,000 children. National organizations including the Princeton-based National Alliance for Autism Research now report that one in 250 children has autism. Why the number of children diagnosed has risen so rapidly is unknown. Some respected public health officials attribute the apparent upsurge to “increased awareness” of the disorder, especially of its milder form. But the California Department of Developmental Disabilities documented a 273 percent increase in “full syndrome autism” in that state between 1987 and 1998. Though the theory is not commonly accepted by physicians, many parents link the onset of their children’s autism to mercury poisoning from vaccines and from metals and chemicals in the environment; children born with weak and compromised immune systems may be particularly susceptible.

Experts now speak of autism as a spectrum. At the “high-functioning” end is Asperger’s disorder; individuals with Asperger’s have normal and even above-average intelligence. Those with severe autism often are non- or minimally verbal, and may engage in acts such as head-banging, and in repetitive behaviors such as hand-flapping. Charlie is somewhere in the middle. At the age of six, he can speak in sentences of two and three words. For two years, Charlie was in an intensive in-home therapy program, 40 hours each week. Under the guidance of a behavior consultant, a small armada of therapists filled Charlie’s hours with drills and programs to teach him to sit at a table and look at others, to imitate others’ actions, to shape his speech from babble to specific sounds to words to sentences, to build with Legos, and to identify the parts of his body, the rooms in the house, the furniture in those rooms, the colors, his name.

When Charlie was four we moved back to New Jersey, which has some of the nation’s best autism schools. My son writes “Charlie” in wobbly letters, mumbles the Pledge of Allegiance, answers questions (“Who are the boys in your class?” “Joey, Sean, Jake!&rdquo with brio, and, as his dad returns home, yells out, “Daddy be back Daddy cumminn home!”

I take support from parents of other special-needs children, some of them also Princeton alumni. Nicoletta LaMarca-Sacco ’90 calls herself a “mother in two different worlds.” She is raising her 2-year-old typical daughter, Francesca, and her 5-year-old son, Felice, who has autism. Felice’s first words appeared when he was two; he then lost his language. At age three he spoke in phrases, but true sentences were not heard until he was four. Now at five, though delayed, he has nearly caught up with his typical peers. Felice has daily home therapy sessions, special education, afterschool activities (gym and tap dance), and a lot of one-on-one time with his very busy mom.

Nicoletta and I are autism moms now, a role that requires us not only to provide for our sons’ special needs, but to help ensure that our society offers opportunities for all children to learn in the ways they can learn, and to grow in the ways they are able. No just society can afford to withhold proven and effective educational services from disabled children. Cyberspace has proved a boon for autism parents, whose family needs can make it impossible to attend educational conferences and rallies in support of funding for autism research, not to mention a shared cup of tea. Though we are classmates, Nicoletta and I met through Mosaic, an e-mail discussion list for mothers of children with autism in northern New Jersey. We both had attended a conference organized by Princeton and the Eden Institute; Nicoletta later wrote that she was saddened that Felice might not have the chance to attend our alma mater. I wrote back, and we met in person.

As the parent of a child with special needs, my hopes for my son’s future have been rewritten. Charlie will require special education services through his school years. College, driving a car, marriage, grandchildren – these are all uncertainties. In the lives of children like Charlie and Felice, graduation from high school, having friends, and saying “I’m thirsty” are cause for joyous celebration.

What is achievement? What makes a child “perfect”?

Charlie is learning to say more and more every day.

“Ow,” he says.

I run to Charlie, who perhaps has stubbed a toe. A sparkle comes to his eyes.

He smiles. “Burgers and fries!”

“Where do you get that?” I ask.

“Burgers, fries burgers, fries and burgers!”

“Where do you get that – your favorite restaurant . . . ”

Charlie’s eyebrows twist.

“At Mc . . . .” I whisper.

“Makk,” says Charlie, wriggling from his shoulders to his arms to his knees. Then he’s still, tilting his head to the right and looking out of the corners of those big brown eyes.

Charlie says, “MakkDonallls! Burgers ann fries! Burgers fries fries burgers.”

Children with autism neither must be ignored nor contained in the guise of a “tragedy,” or even as a “blessing,” though many of us parents do view our children as a special, and most precious, most perfect, gift. Some children very nearly will recover from the effects of autism, while others will learn ways of communicating that do not involve banging their heads on the floor. Whatever the outcome, we try never to forget that these are kids before they are a cause – losing their baby teeth, jumping in puddles, going to get their backpacks at the end of the school day, and saying “Mommy” with a smile and a look at the teacher.

Time Well Spent

Originally posted in August 2005 by Wade Rankin at Injecting Sense. Used with permission.

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Tonight I took my 15-year old son, one of my non-autistic kids, to the local fishing pier on the shore of Lake Pontchartrain. There was a nice breeze out on the water, making it the type of comfortable evening we rarely see in South Louisiana during the summer months. A night like this brings people out, and the pier drew strollers as well as fisherfolk. One gentleman and his son caught my eye. The boy was about 10-years old, and was obviously autistic. He displayed the typical stimming behavior I’ve come to recognize, and his speech was relatively undeveloped for a young man of his age. But his father did not seem self-conscious in the least; he was just enjoying some well-spent time with his son on a beautiful evening.

Before the birth of my youngest child (the one on the spectrum) I would have focused on an autistic child and felt sorrow for the parents without bothering to notice that the parents neither needed nor wanted pity. Now I know better.

Having an autistic child is a gift. Every day I get to celebrate progress that I took for granted with my older kids. The attention my son requires keeps him in the forefront of my consciousness every waking moment. He has made me a better parent to all of my children.

Let there be light - A parent’s story of an autism diagnosis

This diagnosis story was originally posted by Brian in the two part entry Let there be light on his blog Autism: Deal With It! on 7-9 April 2006 and is reprinted here with permission.

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Yesterday at work, I was talking with a coworker who stopped me in the hall. The conversation was about recognizing Autism in an infant/toddler and the parent’s perspective. As we talked, I was asked where on the Internet someone could go for good information. Despite the fact that I have spent countless hours on the Internet reading about Autism and the Pervasive Developmental Disorder spectrum, I could not think of a simple sing source of information. Sure, there are tons of sites, but very few address what is crucial for the parent who is embarking on this journey… instead focusing on what causes Autism, how to work with Autistic children, who to become and advocate, etc.

I explained to my co-worker that the most important thing for a parent was to understand that their emotions are normal… the rest, knowledge about who to talk to and what to do, will come to light as time progresses. That being said, I decided that I should take some time and blog space to relate some of my feelings and thoughts during the period prior to and shortly after Connor’s diagnosis.

First, I need to start at birth. Although some people may think it insignificant, I didn’t at the time, nor do I now. What I am referring to is that Connor failed his initial newborn hearing test the first time, but passed it the second time. When that happened, Autism was the last thing in my mind; I was more concerned that there may have been some minor hearing issues. Of course the medical professionals told me that I should not worry, as that happened some times.

Of course at his 3 month check up, his hearing tested fine and everything seemed to be doing well. At 5 months an infant should react to loud noises, turn their head towards noises, and watch your face when you speak to them. Connor never really did any of these at 5 months. If he did, it was intermittent at best. Between 5 months and 12 months is when an infant’s “baby talk” is supposed to start developing into things like “mama” or “dada”. For us, it was well into 14 month when Connor started to use “dada” and he used it inappropriately until well on towards 30 months. (He still has gender reversal issues where he will use the incorrect pronouns.)

At about 18 months, I started to suspect that there was something going on. I began to research different developmental delays on the Internet and in book stores. At the time, Autism kept popping into my head, but I wasn’t sure if that was really the problem.

Some time around 30 months (2 ½), Connor’s vocabulary started to pick up pretty well _(about 15-20 words or roughly ½ of the normal vocabulary for a 24 month old toddler), but most of his speech was developed through echoing television shows and not through conversations with his mom or I. In hind site, this was a glaring example of echophilia, something common in Autism.

I think it was probably around the age of 3 that Connor started to do self stimulation actions; such has hand flapping and spinning. He also started to make a great number of auditor noises to accompany the hand flapping. It was these actions that truly narrowed my investigation into Autism and the related spectrum disorders. I began to suspect, with a great deal of evidence to back it up, that Connor was in fact Autistic.

Over the next 6 months, my wife and I struggled a great deal. While we really wanted to know what was going on with Connor and if he truly was Autistic, there was a great deal of emotion working against us. One of the hardest things for us to deal with was a sense of guilt. My wife and I would frequently look at each other and ask if we were making it all up. At times we both felt as though we were trying to “make” Connor Autistic. It didn’t help that Connor was an incredible adaptor (and still is to this day). He made such a great public appearance that any mention of Autism to our family and friends received odd looks.

Not knowing what to do, I approached several people at work for help (the advantages of working in a hospital!). The pediatrics department was SO helpful and provided me with the information on who to contact at the regional center. We were finally on our way to a diagnosis and an understanding of what, really, was going on.

I must say that this was VERY difficult for us… in fact, I would even say that the time we spent suspecting it, but not having a diagnosis, was more difficult than trying to learn to cope with the diagnosis once it was made.

Realizing that getting into the regional center might take a while and that without a referral or a diagnosis, we would most likely be at the bottom of the list for some time. So my wife and I decided to first go to Connor’s pediatrician to get a referral. My wife made the appointment and I took the necessary time off of work. A few days before the appointment, we sat down and discussed what we would say and how we would approach this. The first thing that we agreed on was that we would not mention to the Doctor that we had suspicions of Autism. We would, instead, present our concerns and see what the Doctor’s opinion was. So, we spent some time writing down our concerns, trying to get them on paper so that we wouldn’t miss anything.

The appointment with Connor’s pediatrician went as we expected it. After presenting our concerns, the Doctor stated that he suspected that Connor may have Autism. He further explained that he could not make an official diagnosis, but would instead refer us to the regional center, where they could get Connor properly evaluated and diagnosed. Everything was happening as we had planned. It felt good to be in some semblance of control.

A few weeks after the appointment with the pediatrician, we had an appointment set up with the intake coordinator for the regional center. My wife and I did not know what to expect from this meeting, so we were a little nervous, to say the least. Fortunately enough, the person we met with was extremely helpful. She explained that, while she could do a preliminary evaluation of Connor to see if he was likely to need their assistance, she could not provide a diagnosis (mirroring what the pediatrician had explained) as that was only available from a psychiatrist. In her initial evaluation of Connor, she commented that there were certainly signs of Autism and that we needed to move forward with an official diagnosis. She did, however, provide us with some unexpected news that put a rush on things. In particular, there were a number of services that would no longer be available to Connor if he became part of the program past his 4th birthday. Being that Connor was only 2 months shy of that date, we needed a diagnosis soon.

The intake coordinator for the regional center also explained that they would only accept a diagnosis of Autism from several sources. The first being one of their own psychiatrists. Unfortunately, the wait time for an appointment with one of the staff psychiatrists was about 3-6 months, putting us past the 4th birthday and limiting the services available to Connor. We both agreed that we didn’t want that. Our next option was to travel to Stanford and have one of their Autism Specialist evaluate Connor. The last option was to have Connor evaluated by a very well respected psychiatrist in San Jose.

After some talking, we decided that our best bet was to set up an appointment with the psychiatrist in San Jose. In hind site, this was one of the smartest decisions we could have made. The appointment was a mere 2 weeks after our meeting with the regional center, so there was little time to slow down and think about things. We, my wife and I, did talk a little about “what it…”. Questions about things like, “What if he determines that Connor isn’t Autistic?” and “What if he determines that Connor is Autistic?” were the only topics we discussed over the two week period.

Now, before I talk about the appointment with the psychiatrist, I need to explain a little about Connor. You see, he is highly intelligent and has an amazing ability to act neurotypical for short periods of time. That has been a mixed blessing, as it frequently leads to people believing that he was misdiagnosed with Autism. It is a blessing and a curse to a certain extent. But talking about that aspect is something I will save for a latter blog entry.

On to the appointment… We had been properly warned that the evaluation would take a good part of the day and that we should expect to be in San Jose for about 6 hours. This meant that Aiden needed to be watched by someone. I am thankful, to this day, to our friend who graciously watched him for us.

The evaluation itself was rather interesting and included an interview with my wife and I, discussing our concerns and our experiences with Connor. There was also some time spent watching Connor doing imaginative play on his own, with his mom and I, and with the psychiatrist. From there we went on to testing for learning delays and disabilities. Finally, after a number of different things, which all are more of a blur at this point, we were done. The psychiatrist came into the room to discuss things with us.

He started off explaining that Connor was rather unique. Specifically, he commented on Connor’s initial appearance of being normal. He went so far as to say that when he first met Connor and was talking with him, he started to form an opinion that he was not Autistic and really didn’t show signs of anything. But that opinion soon changed. As he interacted with Connor more, and observed Connor’s interactions with his mother and I, the Autism started to show. The psychiatrist explained that Connor most certainly met the criteria for Autism, but was also extremely high functioning.

Hearing the diagnosis from the psychiatrist’s mouth sent a feeling of relief through both my wife and I. We looked at each other, relieved that we were not bad parents trying to press the diagnosis of disorder onto our son. We were not bad parents at all. We had been right in our feelings. Unfortunately, after the relief subsided, we both began to gain a feeling of being overwhelmed. Until this point, it was all speculation… Nothing we could do without knowing for sure. Now that we knew, we had so much to do.

As soon as we received a copy of the diagnosis from the psychiatrist, we went straight to the regional center and get started on the paperwork for getting services for Connor. Like a small pebble sized piece of ice rolling down a snow covered hill, this process was beginning to pick up speed and mass… snowballing.

As things progressed through the regional center, we were scheduled to take a mandatory course on ABA offered by them. We were excited about this. We figured that there would be other parents at the course who we could talk with about this… who were in the same situation. Unfortunately, we were somewhat saddened to find that the parents in attendance had very different situations. In fact we were the only parents there dealing with Autism. This started our feelings of being on our own in this adventure. It was tough for a number of weeks. Not only did we feel alone, but we also struggled to understand what exactly it really meant to have Autism. There were so many myths about Autism that we needed to be able to dismiss.

I remember coming home to my wife one evening and seeing her in tears. She was thinking about all the depictions of an Autistic person as being devoid of sympathy and emotion… it hurt her deeply to think that she would never be able to have those great emotions from Connor. I knew that it was not true… but helping her to understand that was tough. I began to really feel the same feelings of being alone in this battle that we had in the ABA class. Adding even more to the isolation was the increasing number of people that didn’t believe that Connor was Autistic. It came to a point that my wife and I, only half jokingly, stated that we would simply carry around a copy of Connor’s diagnosis for everyone to read.

Let me tell you, there is little worse than feeling alone in such a struggle. That feeling being compounded by the distrust of family and friends was truly a low for us.

Over time, we were able to educate our family and friends and they began to accept it, or at least they stopped challenging us on it.

As I look back at the time between when we started to suspect Connor had Autism and where we are today, I see so many places where I would have loved to have been able to read someone’s story about their trials… Just knowing that others went through the same self doubt, the same odd feeling of happiness that there was a diagnosis, and the feeling of being alone would have helped.

That is one of the reasons I started this blog. I hated the feeling of being alone and it is my hope that even if it is but one parent out there who is going through what we went through that, in reading this, knows that they are not crazy for having feelings of self doubt and feelings of happiness. And, most importantly, I can help them in knowing that they are not alone in this.

Autism and military service

Special thanks to Wade Rankin at Injecting Sense for the original pointer the Oregonian article.

If your autistic child is in an inclusion setting in high school, attending as a "regular" student, you will eventually encounter military recruiters. As part of No Child Left Behind, public schools are obligated to provide student information to the local recruiters. A recent story in the Oregonian (excerpted below) shows the problems that can occur.

To help prevent this kind of problem, you can take the following steps:

• Have appropriate documents of diagnosis, treatment, IEPs, etc. for your child
• If possible, obtain a letter from the school district case manager, pediatrician and others
• Be proactive, and find out who the local recruiters are, for all services
• Be even more proactive, find out the chain of command for your local recruiters, all the way up to the first field grade officer (usually a Lieutenant Colonel, Battalion Commander)
• Send a letter to the local recruiter, with a courtesy copy to the chain of command, stating your child's situation and that you would appreciate having your child excluded from their recruiting activities
• If needed, send the documentation you've gathered to the local recruiters.

Of course, you may want to ask your son or daughter what they would like to do before acting on the latter two options. They may want to, and be able to, serve in the military and it would be wrong to try to stop them (beyond the efforts many parents already make to keep their "typical" kids out of the military). On a related note, registration for Selective Service is still mandatory for all men on their 18th birthday. As far as I know, there are no exceptions.

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"When Jared first started talking about joining the Army, I thought, 'Well, that isn't going to happen,' " said Paul Guinther, Jared's father. "I told my wife not to worry about it. They're not going to take anybody in the service who's autistic."

But they did. Last month, Jared came home with papers showing that he not only had enlisted, but also had signed up for the Army's most dangerous job: cavalry scout. He is scheduled to leave for basic training Aug. 16.

Officials are now investigating whether recruiters at the U.S. Army Recruiting Station in Southeast Portland improperly concealed Jared's disability, which should have made him ineligible for service.

…

Jared didn't speak until he was almost 4 and could not tolerate the feel of grass on his feet.

Doctors diagnosed him with moderate to severe autism, a developmental disorder that strikes when children are toddlers. It causes problems with social interaction, language and intelligence. No one knows its cause or cure.

School and medical records show that Jared, whose recent verbal IQ tested very low, spent years in special education classes. It was only when he was a high school senior that Brenda pushed for Jared to take regular classes because she wanted him to get a normal rather than a modified diploma.

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tagged as: Autism, Asperger's Syndrome, Military Recruiting, Selective Service

Don’t mourn for us: Thoughts for parents from an autistic man

[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. You can find it online at http://ani.autistics.org/dont_mourn.html.

It is an outline of the presentation Jim Sinclair gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

Don't Mourn for Us
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child's and family's life cycle.

But this grief does not stem from the child's autism in itself. It is grief over the loss of the normal child the parents had hoped and expected to have. Parents' attitudes and expectations, and the discrepancies between what parents expect of children at a particular age and their own child's actual development, cause more stress and anguish than the practical complexities of life with an autistic person.

Some amount of grief is natural as parents adjust to the fact that an event and a relationship they've been looking forward to isn't going to materialize. But this grief over a fantasized normal child needs to be separated from the parents' perceptions of the child they do have: the autistic child who needs the support of adult caretakers and who can form very meaningful relationships with those caretakers if given the opportunity. Continuing focus on the child's autism as a source of grief is damaging for both the parents and the child, and precludes the development of an accepting and authentic relationship between them. For their own sake and for the sake of their children, I urge parents to make radical changes in their perceptions of what autism means.

I invite you to look at our autism, and look at your grief, from our perspective:

Autism is not an appendage

Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person–and if it were possible, the person you'd have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

I wish my child did not have autism,

what they're really saying is,

I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead.

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.

Autism is not an impenetrable wall

You try to relate to your autistic child, and the child doesn't respond. He doesn't see you; you can't reach her; there's no getting through. That's the hardest thing to deal with, isn't it? The only thing is, it isn't true.

Look at it again: You try to relate as parent to child, using your own understanding of normal children, your own feelings about parenthood, your own experiences and intuitions about relationships. And the child doesn't respond in any way you can recognize as being part of that system.

That does not mean the child is incapable of relating at all. It only means you're assuming a shared system, a shared understanding of signals and meanings, that the child in fact does not share. It's as if you tried to have an intimate conversation with someone who has no comprehension of your language. Of course the person won't understand what you're talking about, won't respond in the way you expect, and may well find the whole interaction confusing and unpleasant.

It takes more work to communicate with someone whose native language isn't the same as yours. And autism goes deeper than language and culture; autistic people are "foreigners" in any society. You're going to have to give up your assumptions about shared meanings. You're going to have to learn to back up to levels more basic than you've probably thought about before, to translate, and to check to make sure your translations are understood. You're going to have to give up the certainty that comes of being on your own familiar territory, of knowing you're in charge, and let your child teach you a little of her language, guide you a little way into his world.

And the outcome, if you succeed, still will not be a normal parent-child relationship. Your autistic child may learn to talk, may attend regular classes in school, may go to college, drive a car, live independently, have a career–but will never relate to you as other children relate to their parents. Or your autistic child may never speak, may graduate from a self-contained special education classroom to a sheltered activity program or a residential facility, may need lifelong full-time care and supervision–but is not completely beyond your reach. The ways we relate are different. Push for the things your expectations tell you are normal, and you'll find frustration, disappointment, resentment, maybe even rage and hatred. Approach respectfully, without preconceptions, and with openness to learning new things, and you'll find a world you could never have imagined.

Yes, that takes more work than relating to a non-autistic person. But it can be done–unless non-autistic people are far more limited than we are in their capacity to relate. We spend our entire lives doing it. Each of us who does learn to talk to you, each of us who manages to function at all in your society, each of us who manages to reach out and make a connection with you, is operating in alien territory, making contact with alien beings. We spend our entire lives doing this. And then you tell us that we can't relate.

Autism is not death

Granted, autism isn't what most parents expect or look forward to when they anticipate the arrival of a child. What they expect is a child who will be like them, who will share their world and relate to them without requiring intensive on-the-job training in alien contact. Even if their child has some disability other than autism, parents expect to be able to relate to that child on the terms that seem normal to them; and in most cases, even allowing for the limitations of various disabilities, it is possible to form the kind of bond the parents had been looking forward to.

But not when the child is autistic. Much of the grieving parents do is over the non-occurrence of the expected relationship with an expected normal child. This grief is very real, and it needs to be expected and worked through so people can get on with their lives–

but it has nothing to do with autism.

What it comes down to is that you expected something that was tremendously important to you, and you looked forward to it with great joy and excitement, and maybe for a while you thought you actually had it–and then, perhaps gradually, perhaps abruptly, you had to recognize that the thing you looked forward to hasn't happened. It isn't going to happen. No matter how many other, normal children you have, nothing will change the fact that this time, the child you waited and hoped and planned and dreamed for didn't arrive.

This is the same thing that parents experience when a child is stillborn, or when they have their baby to hold for a short time, only to have it die in infancy. It isn't about autism, it's about shattered expectations. I suggest that the best place to address these issues is not in organizations devoted to autism, but in parental bereavement counseling and support groups. In those settings parents learn to come to terms with their loss–not to forget about it, but to let it be in the past, where the grief doesn't hit them in the face every waking moment of their lives. They learn to accept that their child is gone, forever, and won't be coming back. Most importantly, they learn not to take out their grief for the lost child on their surviving children. This is of critical importance when one of those surviving children arrived at t time the child being mourned for died.

You didn't lose a child to autism. You lost a child because the child you waited for never came into existence. That isn't the fault of the autistic child who does exist, and it shouldn't be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don't mourn for us. We are alive. We are real. And we're here waiting for you.

This is what I think autism societies should be about: not mourning for what never was, but exploration of what is. We need you. We need your help and your understanding. Your world is not very open to us, and we won't make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it–and then do something about it. The tragedy is not that we're here, but that your world has no place for us to be. How can it be otherwise, as long as our own parents are still grieving over having brought us into the world?

Take a look at your autistic child sometime, and take a moment to tell yourself who that child is not. Think to yourself: "This is not my child that I expected and planned for. This is not the child I waited for through all those months of pregnancy and all those hours of labor. This is not the child I made all those plans to share all those experiences with. That child never came. This is not that child." Then go do whatever grieving you have to do–away from the autistic child–and start learning to let go.

After you've started that letting go, come back and look at your autistic child again, and say to yourself: "This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don't know who this child is or what it will become. But I know it's a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it."

If that prospect excites you, then come join us, in strength and determination, in hope and in joy. The adventure of a lifetime is ahead of you.

tagged as: Autism, Asperger's Syndrome, Neurodiversity, Jim Sinclair, Parenting

Autism and interaction with law enforcement

As part of planning for growing up and transition to adulthood, here are two key things to consider related to your autistic child and potential future interactions with law enforcement:

• Include education about the purpose and appropriate behaviors towards law enforcement personnel and agencies as part of IEP and other planning documents
• Check with your local first responders (police, fire, emergency medical, etc) about their level of awareness of autism and appropriate training in handling autistic citizens. Help these agencies improve their awareness and training, if needed.

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Charles Fox, on his Special Education Law Blog, has a link to and discussion of the report Avoiding Unfortunate Situations. From the report's introduction:

Law enforcement agencies in the 21st Century are embracing community policing and better education for their increasingly diverse workforce. There is also a growing interest in the global autism community to bring public awareness of autism and the people it affects to law enforcement professionals. As a parent of a young man with autism and reporter/researcher on this topic since 1991, I hope to bring you useful information about autism and the law enforcement community. Sharing critical autism recognition and response information with our law enforcement, first response, criminal justice and educational communities is my mission. The goal? Better community experiences for everyone.

A couple of key discussion points that Charles raises:

One of the truly remarkable statistics referenced in this report is that"[p]ersons with autism and other developmental disabilities are estimated to have up to seven times more contacts with law enforcement agencies during their lifetimes (Office of Special Education and Rehabilitative Services News In Print, Winter, 1993)." In view of the likelihood of contact between law enforcement and persons with disabilities, these guidelines should be considered in developing IEP goals, BIPs and transition plan goals.

The level of candor of this report is refreshing. It openly states in the training section for police that "[a]utism issues remain un-addressed in standard police officer training programs." … Moreover, one area of inquiry should be to your local police, fire and paramedics as to their level of autism training and awareness.

The main part of the report includes sections on What Families Can Do To Reduce Police Interactions and Information for Persons with Autism. The site also includes a Law Enforcement Handout.

The five stages of autism

For many families, a diagnosis of autism in a child brings about a profound sense of loss. Since most people don't actively educate themselves about autism before the diagnosis - let's face it, no one thinks it can happen to them - most of what they know comes from what they may see, hear, or read in the media. Unfortunately, the vast majority of stories about autism in the media are about the 'devastation' of autism, of how kids are 'lost' in a strange and terrible world away from society.

As a result, I think that many people who find themselves facing an unexpected diagnosis slip into the 5 stages of grief. The link provides some details on the 5 stages, including some discussion of why some think they are not valid, but here are the 5 stages themselves:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

These are the stages, as I understand it, that a person will go through if left on their own, if they don't receive any support or gain any understanding beyond the feeling of loss. One of my goals with Autism for Parents is to present an alternative to these 'default' stages that treat an autism diagnosis as a devastating loss with a series of steps that parents can take to fully understand their situation and go beyond mere acceptance.

Here are the steps I've come up with.

• Diagnosis - the first step on the journey
• Confusion - unavoidable for most parents new to the world of autism
• Understanding - the process parents undertake to understand the situation
• Plan - based on understanding gained in previous step, make a plan for life ahead (which is, in fact, something parents do with all kids)
• Act - live life to the fullest, adjusting the plan as your understanding grows

In many cases, posts will overlap between steps, especially the Confusion/Understanding and Plan/Act pairs. With these steps, I hope to share actual stories from parents who have gone through these steps as well as simple (and some not so simple) checklists of things you can do.

Site update: Podcasts and other new listings

In addition to the written word of books, blogs, and other websites there are many autism related audio/visual resources. I’ve added a new page, Podcasts and other Multimedia Resources, that will list these resources. Thanks to Michael Boll from Autism Podcast for letting me know about autism podcasting.

I’ve also updated the Blogs by Autistics page to include The Rettdevil’s Rants, a recently discovered (by me) blog by 23 year old Kassiane.

Autism resources for parents

Part of what I'm hoping to accomplish with this site is to provide a good starting point for parents trying to learn more about autism, with information and links to a wide variety of resources - both on and offline. I've established a series of pages that will list and discuss some of these resources.

Blogs:

Blog, I believe, represent probably the single largest resource of current and ongoing information for parents of autistic children. Of course, finding a blog (or blogs) that help you personally can be a challenge. The sheer volume of blogs and diversity of perspectives and opinions can get to be overwhelming. I know that there are many, many excellent blogs on the subject of autism that I've not yet discovered that others read everyday, but I just don't have the time to seek them all out myself.

To help parents new to autism get a good start on finding autism blogs that may help them, I've set up two pages for links to blogs: Blogs by Autistics, and Blogs by Parents. If you know of a blog that you think should be listed here - or if you write one you'd like others to know about - please let me know.

Books: Even with everything available on-line, books remain an excellent source of information for parents. My intent for listing books is to provide a list of books that other parents or autistics especially like, and when possible a review of that book to help others understand what is good/bad about the book. I've set up a page, Autism Books, to provide that list. From this list, each book will link (eventually) to a review(s) of that book. I've started it off with a review of Some Kind of Genius I originally wrote last September. Again, please let me know of any books you think should be listed and if you have a review you would like posted here.

Other: I've also set up a page to list the various organizations related to Autism. I've not done any work on this page yet, mainly because I'm not really very familiar with the organizations or their missions. These organizations range from support of finding a cure to advocacy of autistic rights. Any suggestions on how this might best be formatted are greatly appreciated, as are recommendations for which organizations I should include.